ILLIZAROV (THE FIXATOR) OR ELEGY FOR MY BRACE
I am aged five. This is not about pity. The Ilizarov brace is also called an external fixator because it fixes itself to your deformity, through the use of weights and titanium pins it will move the bone into a more acceptable position. The Ilizarov brace/fixator has also been successfully used to lengthen the limbs of patients who use it properly, which is desirable in this case, because a side effect of the patient's birth syndrome (meaning "from birth" syndrome) is shortness of limbs, particularly legs. Let us not forget that historically this syndrome VPDRR, aka Vitamin D Resistant Rickets has been classed as a form of dwarfism, because in addition to the more familiar risk of deformity, and, indeed, actual deformity, growth anomalies are frequent, and patients rarely reach even the low end of normal height, though in the case of weight unfortunately no such retardant mechanism appears to be operational.
The Ilizaroz has given hope to thousands who have thus far existed without it.
I am aged five, and this machine (It is not exactly a machine though it does have some rudimentary gears, not an engine, but the pins which clench and tighten, a reshaping device, halos, rings), a brace you can call it. ("Your brace."). This machine I am plugged into at night. Not plugged–that is not an accurate use of the words. This machine I am fastened to.
What is it shaped like? When I hear the story of the blind men and the elephant it is MY brace ("You can call it YOUR brace") I think of instantly, only in this case all the blind men are me. I am asked to draw a picture of it one day in school; in the picture MY brace has a heart and two lung sacs, it has ribs just like the model of the human body (not the body, the skeleton) the teacher has hanging inside her closet door. Viz: A typical adult human skeleton is made of the following 206 bones depending on age, though this number does vary owing to a variety of anatomical variations, and what I have is a disease-of-the-bones. My mother sees the drawing and says "What an imagination." She says, "YOUR brace does not look anything like that."
I remember a leather corset. I remember ribs in the corset and a lacing up the front. I remember a metal pelvis and the exterior vice grips–like bones or huge tweezers or a model of the legs of a jointed insect–cricket, praying mantis–that caught around the legs, ribs and bones of metal shaped like my bones, and rings or halos which encased the leg. The rings linked together with pins that went inside me. The pins were to tighten around the flesh and turn the thigh, calf, foot so that the deformity of the bone could be straightened, and the long bones (the bones that make up human limbs such as in this case legs) could be lengthened.
There were boots at the bottom. They were leather like ordinary shoes, like boy shoes. They went up around the ankle, and they laced. There was a metal bar between them. It was as thick as a ruler and a half. It was to hold my feet out in the desired position.
The picture does not get any clearer.
I try to piece together: Leather corset–a burnt sienna leather with eyeholes and laces, boots and metal bar. Boots and metal "bones."
"It did not look anything like that," my mother says when I describe this to her.
You're getting a wee bit carried away I think.
Why do you keep making it so much bigger than it was?
Weights at the ends of the shoes. I do remember that. To make the long bones longer, extend the femoral length, grow the height to within the far reaches of the extreme ends of normal.
I don't know if you could say it worked. Or not.
When I was strapped in, I could not move (not much)
"If you need to go to the bathroom in the night, call us," my parents said.
I did; I always did.
I called, but they did not always answer.
An alarm they slept through.
My father–I could hear his snoring. I could hear the breath in and out. The window of my room looked out at the side of the hill.
I saw the side of the hill where I played with other children during the day (We lived in a disused army base on the outskirts of Saint John's Newfoundland). The apartments were square and painted birthday colors: butter yellow, cobalt blue. Behind the apartments were hills where at first the grass was mowed and behind as high as my chin. Blueberries and wild mushrooms could be gathered there. Some poisonous.
The older children waited for me and sometimes they carried me.
One girl said: "You will always be very ugly that is why we carry you," but I did not understand what she meant.
Bears lived in the hills people said. I watched for the bear on the side of the moonlit hill the way people watch for whales.
Squirrels sometimes. No birds. Though people said at night there were owls in the hills above the apartments.
(And you need to go to the bathroom call.)
The leather smelled strongest when wet. Piss and warmth. Soon it always smelled of piss, but my mother said:
"There is nothing to be done. You can't help it. I know that."
The Ilzarov works by tightening and loosening, By weights and wires that pull and shape the bone so that the deformity is straightened without the need for any invasive surgery whatsoever.
The hope this has given those who previously had none cannot in truth be overestimated. We salute the innovative Dr. Ilizarov who made miracles hitherto unimagined possible for our most desperate patients.
Who is Ilizarov?
Gavriil A. Ilizarov was sent in the 1950's to Syberia as a general practitioner, after graduating from the Medical Faculty, while he developed his own system, consisting of rings. Thereafter Dr. Ilizarov completed his residency in Orthopaedic surgery and his external fixator system, found a frequent application in the Soviet Union. Ilizarov's ring external fixator was also applicated in Europe and Northern America commonly, after he had published his experience in International Journals
You do not notice at first that you do not sleep. You do not know exactly that you are "in pain" because you do not entirely trust yourself to remember what "not in pain" felt like. Don't tighten it again is what you say. Don't let them tighten it again.
The Doctor is fat, a fat Newfie your mother says, how his fake teeth clack but everybody-in-this-place-don't-you-know-gets-false-teeth-for-their-twenty-first-birthday–all the Coke they drink. Sugar because of the cold or
maybe all the cod, probably all the sugar. He smokes while he examines you. He advises your mother to wash the leather with fish oil soap. "The strong smell will take away other smells," is what he says.
Your mother is told to give you a spoonful of cod liver oil every two hours, eight in total, which in combination with the Ilizarov and its weights and wires should lead to very positive results.
Don't tighten it. Don't let them tighten.
"What's the little lady fussing about?" Doctor says. "Why, I don't believe it, a big girl like you. Don't cry. I'll give you a lemon drop. I can't bear children who make scenes. I thought better of you. That's better, that's more like it."
"The next adjustment should produce some really splendid changes…"
When tightened you must think of yourself like a ballerina.
This is third position. The feet extended, the legs turned outward. If you lift your hands above your head on the bed you will look just like the pretty dancer in the coloring book.
And you do. You don't jump, but you picture the jump.
There is float through the air. The dancer makes it look like it lasts longer than it does. In the book your mother gets you about THE LIFE OF A BALLERINA (why this book; why so many books about dancers?) they describe the rosining of the slippers, the girls who dance until their toes are torn to ribbons, and they bleed at the heels (this is like the mermaid in the fairy book who prays for legs and then walks, each step like walking on open blades). but they never show it because their art is perfect, the arms raised and the hands poised like floating above the legs, which–
This is third position. The bolt is tightened two notches and secures the feet and the knee in the most desirable position.
You can turn your head. You can turn your head and look where you want even if you can't actually move.
Here is the dresser. Here is the chair with a sweater on it.
Here is chill square of window.
The moonlit hill just sits there, but it gets harder to sit and watch it. If you cry, someone will be annoyed. Your father if he wakes up and especially your mother. This is not about pity.
You must sleep sometime, but later you can't remember.
Hard to tell "asleep" from "in-pain" from "not-in-pain-not-asleep."
There are pictures. They enter and hard to tell if this is uncontrollable or a story like a film you are making inside your head, piece at a time or a word that spills,
a word like a bead: one and then the other.
Wire. Wire hanger. Red burn. Flower. Flower shaped like a thread. Flower shaped like a hanger. Man. Iron. Fire.
When you draw it in school, it has a heart that is red as the valentine's construction paper but it is shaped like the heart in the medical book on the doctor's desk.
Sealed rooms. Tubes. A plush. A terrible plush.
The moonlit hill when there is no moon. Mist from the ocean and it is vague and terrible shape like a woman with a cloth pulled tight over her face, her huge face breathing into the window
& all over you.
Where did the idea of the IRON MAN come from?
red flower, lake, iron-man, fire. He is the one who watches. You are the one in the lake. The pain is not pain but water, it rises up the femur toward the thigh, the bolts that hold your legs across are sand-bar bank.
How do you know so much? This is like the dream-of-another-person, but you remember it exactly this way.
You are in the lake which is surrounded by red flowers. Someone is watching. He is IRON MAN. He might have a piece of burnt wood or maybe the black thing is the iron. You are very afraid & also excited.
The water is the cold in your bones and this is not burning though burning and ice you know often feel the same. When they put the dry ice on your legs and say raise your hand if you feel it.
When did the idea of the man come?
The soft unclouded blue of air
Laid on the grass I passed away
But did the sunshine even now
One lingering joy that years ago
(16 Lines, October 1837, Emily Bronte, The Ashley, Ms)
"Starraiight," the Newfie doctor says, cigarette in the side of his mouth. "Straight as straight. You deserve a gold star, girlie. You deserve a red lollipop."
The Iron Man is about control. The IRON MAN is about fury. You close your eyes and he says PUNISH. He says bite your lip. He says touch me and this is metal and this is what it feels like,
not alive and what holds in
what holds in and what it is to be corrected
Pain is a red_____. Wire. Hanger.
Not hung up like a coat, but trussed.
The word doesn't mean anything. It is not the same as chickens.
It means laced in. It means ordered.